I can do this!

Last winter, one of the few bright spots in my life was skiing with MK. We'd just moved to a new city where the teachers had decided to reenact the 1950s, and nearly every day in their period-piece involved the new kid crying. There were also meetings in which people who had found their Teaching Certificates at the bottom of cereal boxes told us that MK (who had got all As and Bs in his last school) could not be taught in "a classroom setting," and certainly could not be given marks of any sort. He couldn't even be given a gentleman's C in gym, because he "cowered" when people threw balls at him and his teacher was only trained in teaching gym to "normal kids."

I must admit that our adventures in skiing did not start off particularly smoothly. I know that they do offer adaptive lessons for folks with developmental differences, but MK was understandably not up for learning anything from strangers at that point so, after 20 years away from the mountains, I became a ski instructor.

The first day was spent demonstrating that the rope-tow is a stupid invention and discovering that it is possible to slide down a hill on your bottom, even if pieces of fiberglass have been attached to your feet. The next time out we went further afield to a hill that had a magic carpet, which is sort of a flat escalator that you ride on, skis-and-all, so that novice skiers can be moved up the slope in much the same way as travelers are moved between terminals at airports. This was a definite improvement, but it did not change the fact that MK had to negotiate a sloping ice-field on long slippery sticks, using nothing more than the poor coordination and dyspraxia he had inherited from his father. On top of this his "instructor" had no memory of how people actually lean how to ski. What I can tell you is that it is surprisingly difficult to keep one's own balance when locked in a bear-hug with a sliding eleven-year-old.

When we had thoroughly exhausted ourselves, we retreated to the lodge where, having been in unusually close contact with the actual snow for most of the past few hours, we both found ourselves suffering from post-nasal drip. After taking care of my own nose I started walking MK through his paces for this activity. I had to explain about unfolding the Kleenex, positioning it, closing one nostril, blowing, wiping, switching nostrils --- you know the drill. And while I was doing this, with the odd bit of manual intervention, I noticed a girl of about MK's age watching us with her mouth agape. I could read what was written in the thought-bubble over her head: How could it possibly be that this grown boy did not know how to blow his own nose?

Her unspoken question resonated with me, and brought up another one: What kind of idiot tries to teach his son to ski when he has not yet mastered nose blowing?

At that point, I knew in my heart that I should relinquish my unrealistic expectations and stop torturing the boy. But I had said that we would have another crack at it after our hot chocolate, and it would have seemed weird not to do that, so we zipped up and headed back to the magic carpet. As we rode up the hill, I explained the "snowplow" technique in detail -- something I had omitted from our lessons so far -- and pointed out the kids who were making use of it. And that was it. MK got off at the top and snowplowed down. Then we got back on and did it again. By the end of the day we had mastered the chair lift and knew the terrain of two proper green runs.

Over the winter MK grew to be a good fast skier who was fond of jumps and even ventured down some intermediate level blue runs. It became our weekly antidote to school and, as I said, one of the few bright spots in a storm of unexpected difficulties.

Since then, much has changed. The teacher with the teaching style that I associate with straight skirts and beehive hairdos has been replaced with by a bright young man who is more interested in content than form and some very happy aides with wonderfully positive outlooks on life. MK is once again earning good marks in all his subjects and this last week made a batch of Christmas cookies for his classmates. When I asked him if there had been any left over, he replied, "Yes, and I gave them to my other friends -- the ones who are not in my class."

So things are looking pretty rosy, but there was still a special feeling yesterday as we made our first trip back to the slopes this year. We started with an easy slope in the beginners area. MK had been a little nervous and had been going on and on about his poles and how he did not remember what to do with them and how he didn't think he could ski if he had to hold them. But after we got off the chairlift and MK had cut cut his first couple of turns down the hill, he grinned and shouted over to me, "Hey, I can do this!"

For the next five hours we confirmed that this was, in fact, the case, all over the mountain.

Yip, yip, yippy!

We did it! The NYU Child Studies Center listened and pulled the campaign. This shows, once again, that we can make change and it does make a difference what we say and do. I think that the Autistic Self Advocacy Network played the key role in this victory and they deserve particular thanks, but I was also amazed at how so many people came together with one voice over this. We should be proud of our community.

Tick, tick, tick

I still haven't heard back from Dr. Harold S. Koplewicz (Phone: 212-263-6205) about the Ransom Notes advertising campaign for which he bears responsibility. I am going to be charitable (and optimistic) and guess that the reason he has not called me back is not that he is a coward, but that he has been so flooded with letters, calls, emails and petitions, that he could not possibly respond to us all. Let's keep it up. Letting them know this is unacceptable is good, but getting them to pull the campaign before it causes lasting damage has got to be the goal.

Has anyone posted a list of the staff at the NYU Child Study Center? I'm wondering if mailing them would be another way to exert pressure. My guess is that they are all good people and would be sickened by this campaign if they were aware of it.

Ring, ring

I gave:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
a call today.

He was out, but his secretary seemed willing enough to connect me, so maybe I'll get a call back. I want to ask him how I should explain the Ransom Notes poster to my son if he should happen to see it. He's a child psychiatrist, so he should be able to explain the best way to lessen the trauma that reading an add like that would cause. If you know someone on the autism spectrum, why not give Dr. Koplewicz a call so you'll be prepped on how best to help if one of these billboards come into view while you are with that person. If you are on the spectrum yourself, maybe you have some ideas you could share with Dr. Koplewicz, so he'll be ready when people like me call up asking for advice.

Chance to Change the World

OK, this is it. Your chance to make a difference. I'm talking about the NYU advertising monstrosity. You can read about it here, here or here. You can find out how to take action here. I urge you to do so. In particular, I urge you to telephone the people in question. If you can't do that, fax them. If you are rich, send them a FedEx. Ordinary letters are good too.

Fortunately, we no longer live in NYC, but when I think about how I would explain a poster like that to my son, I get very angry indeed, because I know that there are other parents who will, in fact, have to explain these posters to their autistic kids. The people responsible for need to hear from everyone, now.

I also encourage you to make this a subject of your own blog post.

It Just Came Out

Recently MK is more fully able to explain what he is thinking, but some things that he says just don't make sense, and when I ask about them he tends to get quite upset and say, "It just came out. I don't know why! I wish it wouldn't."

Today I left him in a video game store for a while and, when I came to get him, I came up from behind and put my hand on his shoulder.

"Sorry!" he blurted.

"What are you saying sorry for?"

"I'm not sorry for anything. It just came out!"

This was really bugging him, so I explained that it wasn't that unusual to find ourselves saying things that don't reflect what we want to say. I also mentioned that it happens quite a lot to lots of very smart autistic people. So we decided that, whenever that happens from now on, MK will just have to say, "It just came out," and we will both know what it means without him having to explain any further and we'll just completely forget it and move on.

We've tried it out two or three times since then and it's working smoothly so far.